Recruiting Relatives of a Proband with a Stigmatizing Condition

In 1993, the National Institutes of Health launched its "Molecular Genetics Initiative" by setting out to "collect families" for an analysis of the genetic factors involved in schizophrenia. They intended to begin in the traditional fashion, by identifying probands or index cases amongst patients diagnosed with schizophrenia, and using their medical records to identify family members to recruit.

A psychiatrist on the team cautioned that in contacting the relatives the researchers should take pains not to identify the probands: "This is important," he said, "because the presence or severity of mental disorders may be considered a secret, and subjects may not want relatives to learn of their diagnoses."

• Without reference to the proband's diagnosis, however, how could an investigator, like you, for example, adequately explain to the proband's cousins why you are interested in their participation in a genetic study of this disease?
• If the phenotypic information you are seeking from the relatives (i.e., presence or absence of diagnosed schizophrenia) is already recorded in the proband's medical history, what are the acceptable approaches to using it for research purposes?
• What are the pros and cons of using that information for research purposes without contacting the relatives or obtaining their consent?
• How would you handle this recruitment?